Are you shaking for no reason? You could have an essential tremor

May 23, 2022 — Fred Gutermuth, a 67-year-old retiree from Virginia Beach, can’t recall a moment when his hands didn’t tremble.

During the early part of his life, he never thought much about it. He had been in the Navy for 22 years and the quake didn’t hurt his performance. But after taking a job in his city’s Water Treatment Division, testing the water for possible bacteria or toxins.

“We had to record the tests we did, and nobody could read my handwriting,” he says.

A neurologist diagnosed Gutermuth with essential tremor, a condition that causes parts of the body — especially the hands, head, trunk and legs — to twitch involuntarily and rhythmically. It can also affect the voice.

“For a long time only my hands were affected, but lately I notice that my voice is also starting to tremble,” Gutermuth reports.

What is Essential Tremor?

Essential tremor “is one of the most common neurological disorders we see, affecting about 5% of people over the age of 60,” said Holly Shill, MD, chair of Parkinson’s disease and movement disorders at the Barrow Institute in Phoenix. According to a 2014 study, it can affect up to 7 million people in the United States.

ET can be age-related and can develop or worsen as people age.

“We looked at the whole brain to see if it’s a neurodegenerative disorder, but we didn’t find a ‘smoking gun’ in the brain, although there are features in the brain that are recognized to be associated with essential tremor,” says Peel.

There are two “peak” times for ET to develop – childhood and older adulthood. Shill says that people who develop essential tremor in childhood are “usually those who are more likely to have a genetic, hereditary cause and are more likely to report that others in their family also have essential tremor. In fact, about 60% of people report with essential tremor that there is a family history of it.”

Nichole Harrison is a 50-year-old Australian resident who has experienced ET all her life.

“It started when I was a toddler,” she says. “My parents didn’t recognize it and just thought I was a nervous kid. I thought I was a nervous kid too.”

Harrison has been instrumental in raising awareness of ET through her YouTube and Facebook videos, where she refers to herself as “Shakey Nan.”

“My mother’s great-grandmother was nicknamed ‘Shakey Nan’ by the children. She was diagnosed with Parkinson’s disease, but she had a tremor in her head and a tremor of the whole body when she walked and did good things. Now I realize she probably had ET,” Harrison says.

One of Harrison’s siblings is trembling and Harrison also noticed her father’s hands trembling. “It has recently clicked into place that I must have a ‘double hit’, inheriting essential tremor from both sides of my family.”

Myths and Misinterpretations

Essential tremor is often confused with Parkinson’s disease, but they are different conditions.

“There’s an easy way to differentiate between the two,” says Shill. The tremor in ET is an “action tremor,” which occurs when the person is engaged in activities such as trying to use his/her hands. The tremor in Parkinson’s is a “resting tremor,” which occurs when the hands are still and disappears when the person uses their hands. In addition, unlike Parkinson’s disease, essential tremor usually does not cause a hunched posture, slow movements, stiffness, or a shuffling gait.

Patients with ET are “often considered frail and nervous, which is far from the case,” Shill says. “Just because someone is shaking doesn’t mean they’re nervous or disturbed — although stress can make symptoms worse.”

Someone with ET may be “reluctant to get up and speak in front of people, get food at a buffet table, or eat at a restaurant,” situations that emphasize the tremor. “In that sense, ET can be a very socially debilitating condition,” says Shill.

Essential tremor also interferes with daily activities such as eating, drinking, shaving, writing, and functioning in the workplace. The impact on quality of life can cause stress.

Harrison says people with essential tremor are often mistakenly perceived as under the influence of alcohol or drugs, even by health care professionals, because of their trembling. A woman with ET told Harrison she had gone to the hospital for treatment and a doctor stopped her at the door saying, “Come back when you’re sober.”

Treatments and Management Approaches for ET

There are currently a number of medications available for essential tremor, Shill says. The cornerstones of drug therapy are primidone (an anti-seizure drug) and propranolol (a drug commonly used to treat high blood pressure), which reduce tremor in about 40% to 50% of patients. “Not everyone responds to this, though, which can be very frustrating.”

Deep brain stimulation is a surgical approach “especially helpful for people with fairly advanced tremor who have tried a number of medications over the years,” Shill says.

It delivers electrical stimulation that controls the abnormal signals through electrodes implanted in the thalamus, a structure deep in the brain that coordinates and controls muscle activity. Brain stimulation can reduce tremor, especially in the hands and legs, and has a high success rate in improving quality of life in people with ET.

Focused ultrasound is a non-invasive technology that focuses multiple beams of ultrasound energy into deep brain structures, especially the thalamus, without damaging surrounding normal tissue.

“No incision is needed in the scalp and skull, although the ultrasound burns a small hole in the thalamus to disrupt the vibrations,” Shill says.

Gutermuth said the drugs he tried were “a bit useless.” Focused ultrasound had been recommended but was not covered by insurance at the time. (Since then, focused ultrasound for ET has been covered by Medicare and some other insurance companies are following suit.) Instead, he tried deep brain stimulation, which was helpful. “I was able to keep my job and retired when I was ready.”

Occupational therapy and stress reduction

Shill recommends occupational therapy “to help people with ET find tips and tricks to live better lives.”

An occupational therapist can help patients learn new techniques and can suggest tools (such as weighted utensils, writing instruments and cups, a computer mouse that compensates for vibrations, and voice recognition programs that reduce the need to type and write) to make everyday activities more manageable, artificial aids such as splints and braces to stabilize the arm, and deep breathing to aid in relaxation.

There are stimulator-type therapies that don’t require surgery and may be helpful, Shill says. For example, a non-invasive massager bracelet has received FDA approval.

Shill also recommends using weights and doing exercises to tone and tone the muscles. Approaches that increase relaxation and help people control breathing, such as yoga, meditation, biofeedback, and neurofeedback, may also be helpful.

humor helps

When Harrison’s son was young, she volunteered to read to the children in his class and her hands were shaking so much that she could barely hold the book. “The kids laughed at me. Finally I walked out in tears. I knew I’d never be able to volunteer like this again, and it broke my heart because I’ve always been a mom who wants to be there for everything that has to do with my kids. I started to hide.”

The COVID-19 lockdown “made it much easier because I could live my entire life at home,” Harrison says.

But when she turned 50, she got engaged and, while waiting for the reaction of friends and family to her shaking at the wedding, she started posting videos on Facebook to prepare them. “The videos went all over the world,” she reports.

Sometimes humor brightens things up, Harrison says. “If I’m asked to wear something, I might say to a relative, ‘Do you want it on the floor or do you want to wear it?’ It’s called the ‘elephant in the room’. I’ve always been able to laugh at myself or with my immediate family and friends, but never before in public.”

Gutermuth agrees. “Try to keep your sense of humor,” he advises. “You might spill things everywhere, but if you can laugh, it puts other people at ease to laugh with you.”

Contact us for support

Harrison recommends joining a support group. The International Essential Tremor Foundation and HopeNet sponsor groups, and groups are available on Facebook.

Harrison and Gutermuth are passionate about educating the public and health professionals about this condition. “When I see someone trembling, I try to educate them and tell them that there is help for this condition, be it medical or surgical,” Gutermuth says.

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